Feeling worried

[Cyclegirl54]

I’ve been on 15 mg of Pred for 7 weeks after having upped it from my start dose of 10 mg for 3 weeks. The 10 mg was too low and gp agreed to increase, thank goodness. Was going to try reducing to 14 mg this week but over the last three days have been getting bad neck pain that seems to come from base of skull at back and down the sides of the neck, along with very sore shoulders and arms . I’ve been adopting a low carb eating plan and only doing gentle walking but I find anything that involves using my arms causes me pain. Not sure what to do . Sorry for longish piece.

[Purplecrow]

Hi cyclegirl, wish I had majic wand to fix all the ails we experience with PMR, but alas, I dont. What I can say is that it looks like you are in the early stages of your illness, and it is still developing full- tilt behind the screen of prednisone. In my experience, there will be multiple new symptoms, which will arrive alone or in concert with others, including original pain and stiffness.

I am not a medical professional, but In my opinion, you need to stay at the dose that manages your pain, and dont even consider tapering until that pain has been controlled for a while. “Tapering prednisone” is actually taking away the drug which manages your illness.

In the early months of my illness, my neck, shoulders and hips were the main pain sites... i discovered that I could help my neck and shoulder pain by changing my position when reading books and using electronic devices. I would prop devices on pillows to change the height and shift arm positions when holding books,etc. additionally, I came to recognize that my shoulders functioned as my “canary in the coal mine” . My shoulder pain would increase any time I tried to return to my old activity levels, also whenever life provided extra stress, or even a common cold.

In my early months of PMR (autumn of 2013), I struggled to understand this disorder, and to make some sense out of what was happening. What I finally realized is...PMR is an auto-immune, vascular, multi-system disorder that is still being figured out by the medical community. Those of us who are experiencing this illness are actually providing the medical community with information regarding the full extent of its severity, and so far, prednisone, is the best diagnostic tool, and treatment, for this nasty ailment. .

With no doubt, the experts will be along shortly, to give you some practical advice. In the meantime, i want to reassure you that this disorder can be crazy-making, and most always is unpredictable, especially in the early stages. You will get better, and along the way, you will learn patience, persistence, and the perameters of dealing with your health.

Stay with this forum, you are at the very best place for current information, and support for this frustrating disorder.

Kind regards, jerri

Dx:PMR, 2013, currently 7 mg pred.

[Hidden in reply to Purplecrow]

Jerri, This was an excellent response!!!!!!

Thank you!

[Purplecrow in reply to Hidden]

🙏🏽

[Cyclegirl54 in reply to Purplecrow]

Thank you Jerri. You’ve given me some ideas to help myself and more understanding of this illness. This community is a godsend- thank you 🙏

[stellafmdm in reply to Cyclegirl54]

There is a gadget called a Gimble which holds the pages flat for you and saves a lot of gripping when reading!! I have two different sized ones and would not be without them!

[SheffieldJane in reply to Purplecrow]

Well put! That is exactly how it was and it does get easier. I needed every mg of my start dose of 20 mgs. I would have suffered more at 15 mgs. My taper was slow and smooth until 7 mgs.

March 2019 PMR diagnosed, currently at 7 mgs. Chief symptom fatigue.

[HeronNS in reply to SheffieldJane]

March 2019?

[SheffieldJane in reply to HeronNS]

Sorry, that’s the date I intend to be fully recovered 🙏. I was diagnosed March 2016.

[Mrs-CJ]

My PMR resided in just the same places as yours. Before I was diagnosed I had a sore neck that gradually got worse and spread to my shoulders. Even when I started prednisone those areas were never 100% relieved......and days without any activity (other than sitting in couch tv, reading, iPad) didn’t relieve the aches. Over the years the inflammation has very very slowly decreased (I’m in my 6th year) but even now if I overdo my neck and shoulders are the first to remind me that I am I’ll.

Just have a lot of patience.......your body will thank you for it!

[Cyclegirl54 in reply to Mrs-CJ]

Thank you

[Louisa1840]

Hi Cycle Girl,

Without a doubt your start dose was way too low to control symptoms - most of us start on 20 mg and gradually reduce. You have had some excellent responses and I can't add much except be patient ( as others have said). The average time for PMR's reign is 3 - 5 years and some people have it for life albeit often managed at a very low dose of pred (I have heard of 1 mg a day).

As someone else has said you need to find the dose that manages your symptoms and stay on that for some weeks before being in a hurry to reduce using the DSNS method (lots about this on this excellent forum).

I have had PMR for one year and consider I have got off lightly as, most of the time, I feel quite well. BUT I live within my limits, try not to do too much and always rest after lunch (lucky that I can as I only work part time). I also eat very healthily with veggies from the garden, no processed food etc etc.

I have just started a no gluten, no dairy, no sugar regime which is recommended for auto-immune conditions. We will see how I go and keep everyone posted. I am waiting for delivery of Tom O'Bryan's book The Auto Immune Fix in which the above regime is recommended - apparently it's very good.

[SusanEleven]

My rheum doc starts all her pmr patients on 10mg but quickly increases the dose if it doesn’t control their pain. She has one patient who needed 30mg. The rest varied from 10 to 25.

10 worked for me. I’ve had pmr for 2+ years now. I followed the slow taper. I actually stopped tapering down 6 months ago and take 4mg prednisone per day. Any time I’ve tried lower than 4 it’s painful. My rheum doc says that dose is so low she’s not concerned.

This is my long way of saying pmr is so individual. We all seem to learn what our own physical indicators are of reactions to stress or disease activity. My neck is certainly one! This forum is an amazing source of wisdom and support.

One thing that helped my neck: one of those microwave heating pad things, a large-ish one that drapes around my neck and across my shoulders.

[Cyclegirl54 in reply to SusanEleven]

I like the idea of the heat pad- going to get one ! Thanks!

[ConventCassie]

Be careful. No one told me I would loose all strength in my shoulders. I opened my trunk & threw a bag of groceries in & wham! I hit my head on the big inside latch on my not very far open trunk (surprise to me) & I landed in a heap on the parking lot pavement with a gash in my head & a concussion.

[HeronNS in reply to ConventCassie]

Owch!

[Purplecrow]

Oh so sorry!! I fell and hit my head, concussion, last year, and it took about 6 months to get past the injury . no stitches, doc called it a brain bruise, and said “dont think”. Hard to not think, but I did notice my focus and follow-through were pretty messed up.

Take it easy. Jerri

[PMRpro Ambassador]

It is possible that 15mg is still not enough - it really isn't worth starting low and there is some evidence that hitting it hard at the beginning with a higher dose works better in the long run - it certainly is the case with GCA and the end result is that LESS pred is used altogether.

rheumatology.org/Portals/0/...

This is a link to the most recent guidelines where they recommend "the lowest effective dose in the range 12.5-25mg" - and 15mg is arguably NOT effective for you at present.

[Cyclegirl54 in reply to PMRpro]

Thanks PMRpro, it’s something to discuss with Gp .

[ConventCassie]

I was started on 15 and it didn’t do squat. And I only weighed 92 pounds. 20 was good, but that drop to 17.5 I couldn’t manage at all.